Overview
Primary progressive apraxia of speech (PPAOS) is a rare neurological condition in which a person gradually loses the ability to plan and coordinate the movements needed for speech. Unlike problems caused by muscle weakness, apraxia of speech happens because the brain has trouble sending the right signals to the muscles of the mouth, tongue, lips, and jaw. People with this condition typically speak normally earlier in life, but over time their speech becomes slower, more effortful, and harder to understand. Words may come out distorted, with sounds in the wrong order or with uneven rhythm and stress patterns. PPAOS belongs to a group of brain diseases called neurodegenerative disorders, meaning that brain cells gradually break down over time. It is closely related to conditions like primary progressive aphasia and frontotemporal dementia, though in PPAOS the core problem is specifically with the motor planning of speech rather than with language comprehension or word-finding. In some patients, the condition may eventually spread to affect other thinking or movement abilities. There is currently no cure for PPAOS. Treatment focuses on speech-language therapy to help maintain communication for as long as possible, along with strategies such as augmentative and alternative communication devices (like speech-generating tablets). Research is ongoing to better understand the underlying brain changes, which often involve a protein called tau accumulating in certain brain regions. Supportive care and multidisciplinary management are the cornerstones of current treatment.
Also known as:
Key symptoms:
Slow and effortful speechDistorted speech soundsInconsistent errors when trying to say the same wordDifficulty coordinating mouth and tongue movements for speechChoppy or uneven speech rhythmGroping movements of the mouth when trying to speakTrouble saying longer or more complex wordsAbnormal stress or emphasis on syllablesSpeech that gets worse over timeDifficulty starting words or sentencesPossible mild language problems developing laterPossible mild cognitive changes over timeFrustration or social withdrawal due to communication difficulties
Sporadic
Usually appears on its own, not inherited from a parent
Late onset
Begins later in life, typically after age 50
Treatments
No FDA-approved treatments are currently listed for Primary progressive apraxia of speech.
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Rare Disease Specialist
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Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Primary progressive apraxia of speech.
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Caregiver Resources
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Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What stage is my condition in, and how quickly might it progress?,Should I start using a speech-generating device now, or wait until my speech gets worse?,Are there any clinical trials I might be eligible for?,What type of speech therapy is most helpful for my specific condition?,Could my condition eventually affect my memory, thinking, or movement?,Is genetic testing recommended for me or my family members?,What resources are available to help me and my family cope emotionally?
Common questions about Primary progressive apraxia of speech
What is Primary progressive apraxia of speech?
Primary progressive apraxia of speech (PPAOS) is a rare neurological condition in which a person gradually loses the ability to plan and coordinate the movements needed for speech. Unlike problems caused by muscle weakness, apraxia of speech happens because the brain has trouble sending the right signals to the muscles of the mouth, tongue, lips, and jaw. People with this condition typically speak normally earlier in life, but over time their speech becomes slower, more effortful, and harder to understand. Words may come out distorted, with sounds in the wrong order or with uneven rhythm and s
How is Primary progressive apraxia of speech inherited?
Primary progressive apraxia of speech follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Primary progressive apraxia of speech typically begin?
Typical onset of Primary progressive apraxia of speech is late onset. Age of onset can vary across affected individuals.
Which specialists treat Primary progressive apraxia of speech?
21 specialists and care centers treating Primary progressive apraxia of speech are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.